CYSTIC FIBROSIS FOUNDATION

EIN: 131930701 501(c)(3) Diseases & Disorders

BETHESDA, MD

Total Revenue
$292,016,280
Total Expenses
$443,404,599
Total Assets
$4,885,921,122
Net Assets
$4,592,956,300
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Financial Trends

Organization Details

Formation Year
1955
Legal Domicile
DE
Principal Officer
MICHAEL P BOYLE MD
Phone
3019514422
Tax Period
2023-01-01 to 2023-12-31

CYSTIC FIBROSIS FOUNDATION, founded in 1955, is a major nonprofit in the Diseases & Disorders sector that reported $292.0M in total revenue in fiscal year 2023. Revenue grew 17% year-over-year, indicating healthy expansion. Expenses of $443.4M exceeded revenue, resulting in a 52% operating deficit.

Mission

THE MISSION OF THE CYSTIC FIBROSIS FOUNDATION IS TO CURE CYSTIC FIBROSIS (CF) AND TO PROVIDE ALL PEOPLE WITH CF THE OPPORTUNITY TO LEAD LONG, FULFILLING LIVES BY FUNDING RESEARCH AND DRUG DEVELOPMENT, PARTNERING WITH THE CF COMMUNITY, AND ADVANCING HIGH-QUALITY, SPECIALIZED CARE.

Program Service Accomplishments

Program 1
Expenses: $317,894,830 Revenue: $13,902,161

MEDICAL (AND RESEARCH) PROGRAMS - THE CYSTIC FIBROSIS FOUNDATION IS THE WORLD'S LEADER IN THE SEARCH FOR A CURE FOR CYSTIC FIBROSIS, A PROGRESSIVE, GENETIC DISEASE THAT AFFECTS APPROXIMATELY 40,000...

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MEDICAL (AND RESEARCH) PROGRAMS - THE CYSTIC FIBROSIS FOUNDATION IS THE WORLD'S LEADER IN THE SEARCH FOR A CURE FOR CYSTIC FIBROSIS, A PROGRESSIVE, GENETIC DISEASE THAT AFFECTS APPROXIMATELY 40,000 PEOPLE IN THE U.S., AND MORE THAN 100,000 WORLDWIDE, WHICH CAN INCLUDE PEOPLE FROM EVERY RACIAL AND ETHNIC GROUP. THE CF FOUNDATION FUNDS HUNDREDS OF MILLIONS OF DOLLARS IN RESEARCH TO HELP DISCOVER/DEVELOP EFFECTIVE CF THERAPIES AND PROMOTE HIGHLY SPECIALIZED CARE, WITH $250 MILLION INVESTED. DUE IN PART TO THE CF FOUNDATION'S EFFORTS, THE LIFE EXPECTANCY OF PEOPLE WITH CF HAS MORE THAN DOUBLED IN THE LAST 30 YEARS. THE CF FOUNDATION FUNDS DISCOVERY AND DEVELOPMENT RESEARCH CONDUCTED BY BIOTECHNOLOGY COMPANIES AND ACADEMIC RESEARCH CENTERS. IT FUNDS A SPECIALIZED CF CLINICAL TRIALS NETWORK OF 91 FOUNDATION-ACCREDITED CARE CENTERS. AS OF DECEMBER 2023, THE CF FOUNDATION DRUG DEVELOPMENT PIPELINE HAD 38 THERAPIES IN DEVELOPMENT INCLUDING TREATMENTS THAT ADDRESS COMPLICATIONS, LIKE INFECTIONS, AND GENETIC THERAPIES THAT COULD ONE DAY LEAD TO A CURE FOR ALL PEOPLE WITH CYSTIC FIBROSIS, INCLUDING THOSE WITH RARE AND NONSENSE DISEASE-CAUSING MUTATIONS. TO SUPPORT ITS MISSION, THE CF FOUNDATION ALSO FUNDS AND ACCREDITS A NATIONWIDE NETWORK OF MORE THAN 130 CARE CENTERS. THIS NETWORK PROVIDES THE BEST CARE FOR PEOPLE WITH CF AND HAS BEEN RECOGNIZED BY THE NATIONAL INSTITUTES OF HEALTH AS A MODEL OF CARE FOR A CHRONIC DISEASE. IN 2023, THE FOUNDATION PROVIDED MORE THAN $49 MILLION FOR CARE CENTERS AND CLINICIANS. THIS WORK INCLUDES DEVELOPING CARE GUIDELINES, FUNDING PROFESSIONAL DEVELOPMENT AWARDS, AND ADVANCING QUALITY IMPROVEMENT OF THE HIGHLY SPECIALIZED CARE NEEDED TO LIVE WITH THE DISEASE. THE CF FOUNDATION ALSO MANAGES A PATIENT REGISTRY OF MORE THAN 32,600 PEOPLE WITH CF, 752 OF WHOM ARE NEWLY DIAGNOSED. THIS INVALUABLE TOOL HELPS IDENTIFY NEW HEALTH TRENDS AND EFFECTIVE TREATMENTS AND IMPROVE THE QUALITY OF CF CARE. THE PATIENT REGISTRY IS AN INTERNATIONALLY RECOGNIZED MODEL FOR OTHER NONPROFIT HEALTH ORGANIZATIONS, INCLUDING OTHER CF ADVOCACY GROUPS.

Program 2
Expenses: $23,754,437

THE TWO EXECUTIVES LISTED BELOW PARTICIPATE IN A NONQUALIFIED DEFERRED COMPENSATION PLAN, UNDER WHICH INTERESTS ARE FORFEITED BY THE PARTICIPANT IF THE PARTICIPANT VOLUNTARILY TERMINATES EMPLOYMENT...

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THE TWO EXECUTIVES LISTED BELOW PARTICIPATE IN A NONQUALIFIED DEFERRED COMPENSATION PLAN, UNDER WHICH INTERESTS ARE FORFEITED BY THE PARTICIPANT IF THE PARTICIPANT VOLUNTARILY TERMINATES EMPLOYMENT PRIOR TO THE DESIGNATED VESTING DATE. INFORMATION REGARDING THE AMOUNT OF PAYMENTS MADE BY THE PLAN DURING THE REPORTING YEAR IS PROVIDED BELOW. NAME: JOHN C. MAHLER JR AMOUNT: $320,595 NAME: MICHAEL P. BOYLE, M.D. AMOUNT: $304,926

Program 3
Expenses: $20,162,835

PUBLIC AND PROFESSIONAL INFORMATION AND EDUCATION - TO SUPPORT ITS MISSION, THE CF FOUNDATION CREATED EDUCATIONAL CONTENT DESIGNED TO INFORM AND SUPPORT PEOPLE WITH CF AND THEIR FAMILIES, MEDICAL...

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PUBLIC AND PROFESSIONAL INFORMATION AND EDUCATION - TO SUPPORT ITS MISSION, THE CF FOUNDATION CREATED EDUCATIONAL CONTENT DESIGNED TO INFORM AND SUPPORT PEOPLE WITH CF AND THEIR FAMILIES, MEDICAL PROFESSIONALS, AND THE GENERAL PUBLIC ABOUT THE DISEASE. IN 2023, THERE WERE 106 PUBLICATIONS AND 64 VIDEOS PRODUCED AND MADE AVAILABLE TO SUPPORT EDUCATION AND AWARENESS. YEAR-ROUND MEETINGS AND CONFERENCES PROVIDE UPDATES FOR CF RESEARCHERS, PHYSICIANS, AND ALLIED HEALTH PROFESSIONALS AND CREATE OPPORTUNITIES FOR COLLABORATION ON FUTURE CF RESEARCH PROJECTS AND TREATMENT/CARE EFFORTS. IN 2023, 2.1 MILLION UNIQUE VISITORS CAME TO THE CF FOUNDATION'S WEBSITE. THE CF FOUNDATION PUBLISHED 212 NEW CONTENT PAGES, MADE 177 CONTENT UPDATES, AND PUBLISHED 75 CF COMMUNITY BLOG POSTS.

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Trantor Score

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2023)

Revenue Breakdown

Contributions & Grants $86,607,373
Program Service Revenue $3,437,695
Investment Income $179,149,610
Other Revenue $22,821,602
TOTAL REVENUE $292,016,280

Expense Breakdown

Grants Paid $200,455,461
Salaries & Benefits $127,953,243
Fundraising Expenses $32,375,523
Program Expenses $361,812,102
Other Expenses $114,819,495
TOTAL EXPENSES $443,404,599

Year-over-Year Comparison

2023 2022 Change
Revenue $292,016,280 $248,630,352 +0.2%
Expenses $443,404,599 $396,664,114 +0.1%
Net Income $-151,388,319 $-148,033,762 +0.0%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Governance

Voting Members
16
Independent Members
15
Employees
847
Volunteers
53389

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
3
$2,791,966
Total Directors
16
$1,472,782
Key Employees
3
$4,349,909
Highest Compensated
5
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
LOUIS A DEFALCO VICE CHAIR 5.00
Director
$0 $0 $0
CAROLE B GRIEGO MD TRUSTEE 3.00
Director
$0 $0 $0
KATE O'DONNELL TRUSTEE 3.00
Director
$0 $0 $0
DODZIE SOGAH PHD TRUSTEE 3.00
Director
$0 $0 $0
DAVID A MOUNT TREASURER 3.00
Director
$0 $0 $0
ROBERT H NIEHAUS VICE CHAIR 5.00
Director
$0 $0 $0
ERIC R OLSON PHD VICE CHAIR 5.00
Director
$0 $0 $0
DOMINIC J CARUSO TRUSTEE 3.00
Director
$0 $0 $0
PAUL A MOTENKO TRUSTEE 3.00
Director
$0 $0 $0
TERESA L ELDER VICE CHAIR 5.00
Director
$0 $0 $0
ERIC SCHNEIDER MD TRUSTEE 3.00
Director
$0 $0 $0
STEVEN SHAK MD TRUSTEE 3.00
Director
$0 $0 $0
JOHN S WEINBERG EXECUTIVE VICE CHAIR 5.00
Director
$0 $0 $0
KC BRYAN WHITE CHAIR 8.00
Director
$0 $0 $0
JESSICA H BOYD MD TRUSTEE 3.00
Director
$0 $0 $0
MICHAEL P BOYLE MD PRESIDENT & CEO 40.00
Officer Director
$1,372,546 $100,236 $1,472,782
IRENA BARISIC EVP, CHIEF OPER/FIN OFFICER 40.00
Officer
$692,433 $50,204 $742,637
MICHAEL B CAVADEL SVP, CHIEF LEGAL OFFICER 40.00
Officer
$494,693 $81,854 $576,547
JOHN C MAHLER JR CHIEF INVESTMENT OFFICER 40.00
Key Emp
$2,747,771 $74,825 $2,822,596
BRUCE MARSHALL MD EVP & CHIEF MEDICAL OFFICER 40.00
Key Emp
$741,926 $36,032 $777,958
JOHN P CLANCY MD SVP, CLINICAL RESEARCH 40.00
Key Emp
$659,434 $89,921 $749,355
EARL A LEE MANAGING DIRECTOR, INVESTMENTS 40.00
Highest
$1,114,424 $282,686 $1,397,110
ERIC KOEHRSEN MANAGING DIRECTOR, INVESTMENTS 40.00
Highest
$949,505 $269,002 $1,218,507
ANDREW LEWIS MANAGING DIRECTOR, INVESTMENTS 40.00
Highest
$1,268,837 $49,610 $1,318,447
GENTIANA S AROVAS MANAGING DIRECTOR, INVESTMENTS 40.00
Highest
$541,296 $190,441 $731,737
ALBERT FARO VP CLINICAL AFFAIRS 40.00
Highest
$517,875 $124,895 $642,770
PRESTON W CAMPBELL III MD FORMER CEO & STRATEGIC ADVISOR 40.00
$241,993 $15,498 $257,491
WILLIAM SKACH MD EVP & CHIEF SCIENTIFIC OFFICER 40.00
$277,714 $1,590 $279,304
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2024 No data No data No data No data
2023 $292,016,280 $443,404,599 $4,885,921,122 $-151,388,319
2022 $248,630,352 $396,664,114 $4,735,058,992 $-148,033,762
2021 $417,237,551 $375,611,186 $5,691,109,976 $41,626,365
2020 $800,629,953 $381,380,991 $5,369,999,661 $419,248,962
2019 $605,778,425 $348,650,099 $4,476,511,082 $257,128,326
2018 $275,790,756 $337,912,568 $4,013,935,956 $-62,121,812
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